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Polymyalgia Rheumatica and GCA

Also known as GCA - Giant Cell Arteritis, Temporal Arteritis

All discussions in this group

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  • Pinned

    Reducing pred: dead slow and nearly stop method

    Copied from Eileen's post in another discussion. A group of us worked out reduction schemes individually that have allowed us to reduce far further than ever before but they are all basically the same - and they were based on a scheme a Swedish gentleman worked out when he simply couldn't get...

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    Research: GCA & PMR

    The Research & Development section of Queen Elizabeth Hospital Gateshead NHS Foundation Trust will now undertake qualitative research following the result of the basic survey which we did last year on ‘Your Ears’. We donated £1000 start-up costs. All future costs will now be paid by the NHS....

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    PMR-GCA website addresses and resources

    If anyone has any further suggestions for inclusion do not reply to this but please contact me separately. PMR-GCA NE can be found at www.pmr-gca-northeast.org.uk PMRGCA-NW SUPPORT GROUP http://www.pmrgcasupport.co.uk/ The forums within the NE site are here - http://pmrandgca.myfunforum.org/index.php...

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  • Split doses and tapering

    I have needed to be on a split dose of Pred because taking just a morning dose would never last until the next morning.  Splitting has worked great for me.  In late August and most of September I was at 10 mg morning and 5 mg evening.  End of September I got to see my new rheumy (previous...

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  • Unusual flare

    Unusual flare worked quite hard yesterday, woke in early morning hours, with a terrible pain in left arm and hand. The pain was something like when you have a body part that has frozen and is thawing. Waited a little while tried a heat pad, no help. Then when and took my Pred plus extra 2 mg. Started...

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  • Has anyone taken L-Glutamine with Prednisone?

    I'm so worried about my stomach and muscle wasting with the Prednisone for my PMR. I've only seen one author write about it, but that was in 1994. I don't see any more recent studies.  Seems a lot of benefits from it from what she said, but... I was was excited to read about Betaine...

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  • The Prednisone kills my life!

    I was set on the Prednisone in February 2017. After 6 weeks on 15 mg/day I am going down and presently I take 4mg/day for months. During all these months my health was down significantly: stomach, abdomen, energy, lost appetite. I asked my doctor if I could changing doses for two or three weeks but she...

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  • Maybe a silly question but......

    I am in lots of pain, (all over) with fatigue etc...have had PMR 6 years and cannot get below 10mg without the latter....I have posted on here many times....but my question, (which maybe pointless!) is when I see my doctor on Monday...is there any point in asking her for an adrenal stress blood test. ...

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  • How to manage tapering

    A week ago  my husband died very suddenly while we were on holiday together in Majorca. It was a nightmare and a very stressful experience. About two months ago I had a major flare of my PMR and had to go back up to 20 msg after managing to taper to 5mgs.  I am now on 15mgs but tried to drop...

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  • too much pain - PMR plus GCA.

    Hi - have had Ankylosing Spondylitis for 7 years, PMR for 2 years and GCA as well now for 3 months.  Was hospitalized for 2 nights recently with PMR flare and new GCA symptoms - my Rheumo warned me to watch out for severe headaches previously.  Got down to 5mg prednisone since 2 years ago,...

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  • O M Goodness!!

    Just been on holiday. Done lots of walking everything hunky dory. Then I looked in the mirror .... My lower lashes and half my eyebrows have dropped out !!!

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  • The Shingles Vaccine debate and Polymyalgia Rheumatica

    I had totally forgotten that I found this bit of info well over a year ago when the usual question about the shingles vaccine was asked and wrote a post about it: "I can't give you the direct link but on a site called "virginiahopkinstestkits" There is a quote from Merck ( the makers...

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  • Tingling in calves and feet

    I've had PMR for several years, and up until the last year was mostly controlled by prednisone down to 5.  The rheumy added (one at a time ) 4 different meds to try to help me get off pred.  None worked .  A year ago I had to increase my pred. And now I'm up to 27 ( down from 30)...

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  • Can stress make make your pain worse?

    I don't feel stressed but there is a stressful situation happening at work and I knew about it coming about 3 weeks ago. I had got down to 12mg but the pain in my shoulders and upper back increased. I went up to 13mg and no change so have jumped back to 15mg yesterday. Not really feeling any different....

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  • Diet as an adjunct to PMR Treatment

    For years on and off I've struggled with a plant based diet that eliminates animal fat, oil, and as much sugar as possible.  I've fallen off of it more than I've been on it, but I have stayed on it for nearly a year at a time.  Why?  Because such a diet can halt and even reverse...

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  • Shoulder and Neck Pain

    Hi all, I need some advice on what to do next. This journey started  3yrs ago pain all over but NOT in my neck and shoulders, about 7weeks ago I started getting pains in my collar bone, neck and shoulder, I was on 3mg. I carried on reducing on the dsns method hoping it would go away but it...

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  • Living with some pain and less Prednisone. Good idea?

    I was diagnosed with PMR in March 2017 and my starting dose of Prednisone was 15mg. I am currently on 7mg. and feel much better as far as side effects. ie; sleeping better, less anxious, less hot flashes. However, my pain has increased and I am still very tired. Any thoughts? I feel like I am willing...

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  • I have been diagnosed with polymyalgia

    Hi. I was diagnosed with polymyalgia two weeks ago and my gp started me on 15 mg steroid tablets doctor said that I would be pain free in 48 hours but I'm not 8 days later and the pain is so much better I am able to get out of bed in the morning get dressed quite quickly not so stiff after sitting,...

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  • Achy hurting joints

    I really don't know if this is PMR related but the last two days I have been suffering from joint pain in many joints in my body. I have been taking my pain pills that I take for my back and that hasn't helped to relieve the pain so yesterday I took an extra 5 mg of Prednisone and I got no relief...

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  • Veins have appeared on my chest

    Suddenly 2 days ago lots of large blue veins appeared on my chest, one running across the left side more or less from my shoulder across my clavicle and down a bit. But lots appeared on my breasts. They were there in the evening and much less visible in the morning. Back again at night tonight although...

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  • Coping with Giant Cell Arteritis

    I was diagnosed GCA in October last year. CRP level was 76. Immediately put on high dosage prednisone and within weeks, CRP down to 4, currently on 7. Every test possible was conducted, cardiac, vascular, optic. Biopsy of minor temporal artery confirmed diagnosis which was first mis-diagnosed as TIA...

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  • Cataracts due to prednisone

    Scheduled for cataract surgery next week. I've never had problems with cataracts before medrol. Now they must be removed, both eyes. I'd be interested in other's experience with lens replacement.

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  • Small pimple like rash

    i have been on preds for 3 months and successfully reduced from 20 mg to 10 mg.  Now a new symptom.  Small pimple like rash appearing mostly on my arms and legs.  Itchy and swollen then subsiding into red spots.  is this something  to do with pred withdrawal?  has anyone...

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  • PMR and weather

    Does the cold weather have anything to do with PMR flareups? Ive been hurting since weather change. Thanks!

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  • Methotrexate

    Any comments on switching from Prednisone to methotrexate if after 1 year and reduced doses symptoms are still there. I understood this to be best practise.

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  • help please - newly diagnosed

    i have only just been diagnosed and have luckily found this very useful forum. I have lots of questions and hopefully some of you can help me.  after months of excruciating pain - which I thought was my arthritis flare up - I finally found I have polymyalgia rheumatic. I have been so bad I have...

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  • Terrible cramping in hands and feet

    Hi - I've been on prednisone and now methylprednisolone for my PMR for about 18 months. I'm now on 17.5mg and recently have been experiencing horrendous cramping in my hands and feet. My hands cramp so bad it goes into a claw and is very painful and I lose use of the hands during this time. ...

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  • GCA, Prednisone & Collagen depletion

    I've been on Prednisone for 14 months and suffered numerous side effects, but the one that drives me around the bend, is the collagen depletion since the effects are so visual.  I've tried various moisturizers and try to eat the recommended food (who can eat that much food?!), but wonder...

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  • Liquorice and Prednisolone!

    Hi fellow sufferers.  Some of you may know this already, but I thought it might be helpful to let you know what I've found out about Prednisolone and Liquorice.  I've been suffering from the usual dreadful fatigue and other symptoms of both PMR and reducing Prednisolone and I'm...

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  • Notes on failed taper from 4.0mg to 3.5mg

    I want to share my notes on how I manage this failed reduction in dose.  I have PMR almost 2 years now. In mid August I started my taper from 4.0 mg to 3.5mg using DSNS method.  By mid September I have completed the taper, but things were not good. I decided to go back to my previous dose -...

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  • Extreme tiredness and extreme hit flushes

    Hi there. I am newly diagnosed ( June 2017) with PMR, having endured deep pains in both thighs for about 2 years. Within approximately 4 days of taking 15m Prednisone, I felt amazing, pain free and full of energy. However, my skin is so fragile it bruises it years at the smallest knock, so have been...

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  • Has Prednisone Affected Your Eyesight?

    I'd welcome hearing if Prednisone has affected your eyesight.  I've been on it almost 2 years and have had to get my prescriptions for my eye glasses changed twice, and still my eyesight will vary slightly throughout the week.  When driving things just aren't as sharp as I'd...

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  • New to PMR

    Hello, I am new to forums but could really do with some help coming to terms with PMR. My story so far is that I have been complaining of random pains all over and a feeling in my legs like they are going to cramp up but don't, guess like they are going stiff, tingling or fizzing feeling as well....

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